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	TX: 07.01.08 - You & Yours on social care PRESENTERS: CAROLYN ATKINSON AND PETER WHITE
	THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 成人论坛 CANNOT VOUCH FOR ITS COMPLETE ACCURACY. WHITE Today the average 65-year-old man, if there is such a thing, will die at the age of 82, the average woman at 85. By 2050 it's predicted that men will be living till the age of 88 and women to over 90, on average. That's almost six years longer than now for men and five for women. Which means the proportion of what we call elderly people is likely to grow continually. ATKINSON If this larger generation of older people is to enjoy a comfortable life they need help, many won't be able to work, so they'll need state support for longer and they'll need another kind of support - help to overcome the health and mobility problems which inevitably beset many of us in old age. Help with everyday tasks, such as getting in and out of bed; with shopping; with washing, everyday tasks which can suddenly become difficult to impossible to those with severe arthritis, for example, or someone with Alzheimer's. It's what the professionals call social care. WHITE And it raises the question of how society would pay for all this extra social care. Can we expect already hard pressed social services departments to find the money when they already struggle to meet existing demands for child protection, fostering and adoption services, as well as social care and many other things. Can we expect the government to fund it when it's a political given that no party gets elected by advocating higher taxes? And can we expect to save it ourselves as individuals to pay for a longer life but one which implies a new period of dependency? ATKINSON Now there are echoes of the pension problem here; the financial consequences of a demographic time bomb have been identified. But lasting solutions to the so-called pensions gap were neglected by governments with short term priorities. And in the absence of a consensus about who should pay to fill the gap. WHITE Well certainly when we spoke to people about the likely increased demand for social care in years to come there was little recognition even of the term itself. VOX POPS Umm probably care for the elderly more than anything else or care for the homeless. Depends what you mean by social care, it's a various thing, ain't it, social care. Adoption? People looking after people that are disabled. Pensioners. ATKINSON One and a quarter million people are aged over 85 today. In 2027 there'll be two and a half million and in 30 years time nearly four million of us will be over 85. So have you thought who's going to look after you and pay for that care? MUSIC VOX POPS That's quite terrifying, even kind of talking about it because you kind of assume, even at a young age, if you have children it would be the children that would actually look after that for you but then you can't guarantee that. So perhaps I should think. If you do think about it the stress is too much, we worry about these things - it's like worrying about paying off a mortgage. I've thought I suppose a little bit about my own financial situation, which would mean being able to look after myself, having the money for it, but not beyond that really. MUSIC ATKINSON More than nine million people are over retirement age in England, half a million are in residential care homes. So who will pay for it all? VOX POPS I have a vague idea, I think you have to sell your property to pay for costs. Well if a member of my family gets ill I expect the government to provide enough funds for me to look after the person. So I should think whatever the average pay that every employee gets - well just above that should do it. ATKINSON The fact is if you look after someone for more than 35 hours a week you might qualify for the carers' allowance of just under £50 a week. Ruth works within the care system and has a better idea of what could be in store for her in later life. RUTH Basically you're going to be on your own and relying on your own resources. It doesn't look good. I dread it. ATKINSON Clint also works in the care system and his family help look after his grandmother. CLINT We did have a carer but they changed every couple of days so it's not really fair to her, sort of like she's going senile and seeing different faces very couple of days. ATKINSON Six million of us are currently unpaid carers, it's predicted that figure will reach nine million by 2030. VOX POPS There'll be too many old people, not enough young people - big problem. MUSIC WHITE Well in May the care minister, Ivan Lewis, told us on this programme that the question of how we pay for social care deserved an urgent national debate and we're beginning that debate here today. Ivan Lewis is with us, as is Neil Dixon of the King's Fund, which has compiled a report on the future of care funding, that's been released today. ATKINSON Woman's Hour and You and Yours have compiled a series of programmes which we'll be running throughout January called Care in the UK. All these, like today's programme, will be available as podcasts. To download the You and Yours reports go to the health podcast section of our website, that's bbc.co.uk/radio4/youandyours. WHITE There's a Care in the UK website, which highlights all the coverage and offers help on getting further information. There's a message board for you to discuss the current care system and how it might be improved. You can get further information by calling us on 0800 044 044 and we'll be collating your comments and including them in a document that will be a formal part of the government's forthcoming consultation on care ahead of a green paper. ATKINSON We'll also be launching a care calculator - that's an online system which will allow you to assess how much you might have to spend on care under differing circumstances. Now of course one group of people already fully familiar with the present social care system are people with a disability. Well Mike Smith is 41, he has a rare neurological condition which means he does need social care and he uses a wheelchair. He's a director at Price Waterhouse Coopers. Mike, first of all, what sort of support do you need? SMITH I need basic support on things like getting in and out bed, getting dressed in the morning, helping to go to the bathroom and preparing food, at a basic minimum but also because I have limited dexterity control then I choose to get additional support to help me do day to day things like going to the shops, visiting friends - just generally participating in normal life as others would expect to. ATKINSON Now you've got a full time job, how many hours a day help do you get? SMITH I get my funding stream to help me buy care from two sources. I get six hours a day from my local authority, which amounts to two hours in the morning, one hour at lunchtime, one hour early evening and two hours in the evening. And then from a second source to help provide overnight support. ATKINSON So let's just give a rough idea to people who know nothing about this process. Just very briefly run through the assessment process, how you get categorised at what level care you get, how does that work? SMITH Okay, well the timetable for the process is that you have to apply to your local social services department for help and they will spend a while and then a social worker will visit you to do an assessment process. ATKINSON And then they put you into one of four categories. SMITH Yes what they seem to do is try to understand what needs they think you need and categorise the threats to independence if that need isn't met, in terms of critical, substantial, moderate or low. But it tends to be a very formulaic process and they're looking at how they can fit you into the solutions that they want to provide, rather than the needs that you have yourself. ATKINSON And your experience of how they categorise your social life, just explain how that happens. SMITH Well social life doesn't really come into it, as far as they're concerned, because they have such limited resources and you can understand when they've got so many demands they have to constrain. But for myself I had a slightly amusing reference in my own care package to one hour provided for one significant social encounter a week. Now I think that language gives you an understanding of the kind of mindset that social workers have or are forced to have when they're dealing with these issues. ATKINSON Well worth looking forward to though. Means testing - that then kicks in after the needs assessment because there's two sort of areas of assessment here, aren't there, how does that work? SMITH Well it depends on the local authority and where you live and different boroughs and different parts of the country have different responses. Some assess only certain bandings of criteria that will require contributions, some widely vary the amount of contribution and it all depends on where you live, the amount that you earn or the investment income and savings that you have. And there's definitely a penalty against having savings or having saved for your long term security because that will immediately be attacked and you will end up paying more. ATKINSON So Mike, in a word, sum up the system in your view as a user. SMITH Well it's clumsy, it's very impersonal, it doesn't really meet the real needs of people and it's woefully short in terms of the way that funding is available to provide the real needs that people need. ATKINSON Okay Mike stay with us if you would. WHITE Well that view that the social care system is in crisis isn't confined to users, we've already heard about the demographics, which are making this a more urgent problem year by year, well today the King's Fund, an independent think tank, which last year organised a series of national meetings on social care in collaboration with 14 other concerned organisations, has published a report warning that the current system is simply not fit for purpose. Neil Dixon is chief executive of the King's Fund and is with us. It's a big claim, what do you mean not fit for purpose? DIXON Well first of all that the system is unfair, in the sense that it does penalise people who've saved and have built up savings, often quite moderate savings, so we're not talking about hitting just wealthy people. Secondly, there are, as Mike has referred to of course, these variations around the country and the way in which the system is treating individuals, so if you live in one area you can find that you get access to a service and in another area you won't. It's clearly unfair in the sense that it is failing to meet need. Again, as Mike has referred to, local authorities - and we were looking particularly at older people - but as over the last few years they've had more and more need they have had more money from government but they've also had an awful lot more need to deal with. What they've done is make the criteria more and more difficult. So in a sense they're giving care, often better levels of care, but to smaller numbers of people. That means that large numbers of people are excluded from the process. And finally I think the system simply doesn't support unpaid carers - family and friends - enough and they're a fantastic resource that if you were devising a more clever system I think you would try and say well these are assets and we need to try and make the most of them, rather than sometimes happens at the moment that people are left on their own and find themselves utterly exhausted and unable to carry on the job. WHITE Ivan Lewis, care services minister, do you accept that term - not fit for purpose? LEWIS Well I accept two things. First of all the existing system is not often working for the people that were most there to support. Second of all that the demographic challenges that we face requires a new long term radical funding review. And what the government's going to do in 2008 first of all is have a significant public consultation, which will inform the production of a green paper, that will identify options for reforming the system in terms of support for older people but also the fact that disabled people, as Mike's defined today, want full and independent lives. We're also embarking from April, with local authorities, on a major transformation programme of the existing social care system, giving people themselves far more control over the care that they're offered through personal budgets, a shift to early intervention and prevention and making sure everybody, irrespective of their means, has access to high quality information and advice to help them make difficult decisions about the support services that they require. WHITE You'll know the clock is ticking on this, every demographic bit of information we've given shows how crucial this is, how long is this going to take and how radical is the review going to be? LEWIS Well I think we're going to ask the fundamental questions that need asking. Those questions are what should be available nationally as entitlement, what should be left to local discretion, what should the balance between people's means and people's needs be, how do we deal with this age old question of the parameters between the NHS and social care and what do we expect of families and carers but more importantly what are we going to offer to families and carers? And in the spring of this year, of course, the Prime Minister will be announcing a new deal for carers. So in 2008 there's going to be major changes set in motion in terms of this system but also there's a requirement of fundamental reform for the long term. WHITE Ivan Lewis, Neil Dixon - we will be coming back to you throughout the programme to discuss these issues in more detail. ATKINSON Well the current social care system depends greatly, as Neil said, on relatives and friends offering varying amounts of unpaid assistance. But as more people live in disjointed families this has given rise to a so-called sandwich generation - that's middle aged people caring for children on the one hand and parents, or even grandparents, on the other. Throughout our Care in the UK month we'll be talking to four generations of the same family, who either receive or give care, both informally and through social services. Their experiences run from the 1940s, helping look after relatives during the war, right through to the present day. ACTUALITY Do you want two Alex? Yeah. Two Nice biscuits - not horrible biscuits? There you go. JULIA I'm Julia and I live in Lancashire with my husband, Paul, and my two children - Charlotte and Alex. Charlotte's 11, Alex is 9. And Charlotte has learning difficulties and suffers from epilepsy and she's on the autistic spectrum somewhere. She's nil speech and very high support needs. There's my mum Dorothy who is 61. Mum has Multiple Sclerosis and has had since 1984, or probably before but she was diagnosed in '84, and she lives with my dad - David - who's her carer. And then next door but two to my mum is my grandma - Charlotte and Alex's great grandma. She's May and she's 87 and she's registered blind, she's partially sighted. ACTUALITY Hello Charlotte. Charlotte - good girl. Charlotte what is it you want? Take your coat off and then we'll find you something to eat. Thank you. Thank you very much. Yeah. So you've had a good day today have you? ATKINSON It's one long rush for you isn't it. JULIA Yeah this time of the day I would say is the most stressful for me because you never quite know what you're going to get with Charlotte when she comes home. She'll go in the fridge, she'll keep the fridge open and just get anything out - she drinks vinegar, salad dressing, eats coffee granules - and she has no concept of mess. ATKINSON You have come across the social care system and you've had involvement with social services, what was your first encounter if you like? JULIA About a year ago things got very difficult with Charlotte being at home constantly and we felt that she would be 10 she needed to have a social life and we needed to have a break from caring. So it was suggested that we use a respite home, which initially my husband was quite against because I think he felt that it was his responsibility to care for Charlotte and he didn't want her to go to some place that nobody knew her. I was probably a bit more open to it because I'd thought for quite a while that things were becoming difficult. So through a wonderful social worker that we had at the time she arranged it all and Charlotte initially went for teatime visits and now she gets one night every week and every six weeks we get a two night weekend. ATKINSON How is it changed things then? JULIA Oh it's been a huge thing for us because it's given us time to - well we've got a son, Alex, who's nine and we can take him to the pictures, we can take him out for meals, we can chill out, we can just do the normal stuff that you take for granted when you don't have a child like Charlotte. ACTUALITY Hello. Hello. Everybody. Are you coming in grandma? Nice to see as you're here. Would you like a cup of tea grandma? Yes please, yes, yes I would. GRANDMA I am Mrs Bayriding. ATKINSON Am I allowed to ask how old you are? GRANDMA Eighty seven. And I've done all sorts of things in my life - I've worked in a restaurant serving cups of tea and refreshments and I've also worked on the market and had a sweet stall on the market which I enjoyed very much. I like to meet people and see a lot of different faces of course. ATKINSON Was that during the war then - you were on the sweet stall? GRANDMA Yes, yes - '39-'45 then and they came out with the ration books, they'd tear their coupons out. The liquorice allsorts, they were seven pence a pound, caramels 11 pence a pound. I can remember quite well. Chocolates one and six a pound. ATKINSON And so that was the time when the sort of welfare state started didn't it, kicked in after the war. GRANDMA That's right. There was no carers then or anything was there. ATKINSON Everybody looked after their families then did they? GRANDMA Yes, yes you had to do. My mother-in-law I looked after when she was very poorly and my husband and I used to go and take over. We had to leave our work to go and visit his mother, to look after her for so many hours. ATKINSON What was wrong with her? GRANDMA Well it was - it was cancer and we were there to treat her and see that she got plenty to eat or whatever she wanted to eat or drink. And then of course my sister-in-law came and helped and we did our share together, took over different hours because we had to go back to our work at teatime you see. ATKINSON Do you think we've lost something of that sense of responsibility for each other now? GRANDMA Some people - some people will but I wouldn't do that, I would care for someone if I could. I'm partially sighted, I'm not totally blind, but it's not very nice, what I've got, I get angry at myself, I can't help it but my son's there to help me and whoever wants to come and do a bit for me but I try and do what I can and in fact I do more than what I should do sometimes and make these mistakes but my son takes over then and tells me off. ATKINSON What sort of things do you do that you shouldn't do then? GRANDMA Well I used to take curtains down and things like that but I don't - because I do have angina as well and I was told not to reach and lift, which I don't do anymore but I did do. ATKINSON Have you every thought about having what you might call outside carers to come and help you or are you getting enough support from your family? GRANDMA I get a lot of care from my son and he does get carers' allowance, which he's very glad of it. ACTUALITY I've got some money for you. Yeah 25 pence. Well it must be austerity from the shopping. It was £10.25. I can say it now. DOROTHY I'm Dorothy and I've got Multiple Sclerosis, I've had Multiple Sclerosis for the past 24 years. I then after that had breast cancer, it was 13 years ago. ATKINSON What sort of network have you got around you to help you with all the things you need? DOROTHY I have social care in the form of two carers coming in in the morning to help me get out of bed. ATKINSON So you use a wheelchair all of the time? DOROTHY Yes, yes I can't get out of the chair. And I have a carer come in at lunchtime and she makes my lunch for me, she does other jobs around the kitchen. ATKINSON And is there any support in the evening or is that when your husband takes over is it? DOROTHY At the moment we choose to stay without anyone in the evening. ATKINSON How many hours a day then do people come and help you? DOROTHY I get three hours on one day per week and the other days is two hours a day. I do receive two weeks per year in respite care, which also is a help to my husband and it's nice for me, it's a nice - in a way to get a break from each other in the nicest possible way. ATKINSON You love him dearly but. DOROTHY Yes, yeah, yeah, so I go to York twice a year. JULIA Dad used to work full time up until a year ago and he retired but it was the social care that was put in place that enabled him to carry on doing that. DAVID Yeah I retired 12 months ago, yeah, it was obviously difficult having a full time job and coming home and then caring for Dorothy all the time. It did take its toll, I've had a couple of strange happenings. DOROTHY Health wise. DAVID Hurt me back a couple of times lifting her when perhaps I shouldn't have done and things like that. ATKINSON But the social support that you got enabled you to carry on working for longer than you would have done otherwise. DAVID Certainly yes it did. ATKINSON And do you think carers are recognised for what they do - unpaid carers? DAVID Definitely not, no. I don't think a lot of people realise just how much time and effort is done, you don't think about it, you just do it and carry on and keep going and dash here, there, everywhere and then, yeah ... ATKINSON It's full on. DAVID Definitely. JULIA Are you trying to get past Charlotte? This is Carolyn. Yeah, where do you want to go? You're making plenty of noises so that's nice. That's often a sign that she's happy if she's sort of vocalising in that way. You want - what is it you want? Is she taking my hand to the chocolate - you want a chocolate cake? Yeah? Social care should be given much higher priority and especially respite. So, for example, if we didn't have respite now that we've had for the last 12 months I'm not sure I would be doing this interview now because I don't think I'd be in a state where I could function properly and that would obviously have an impact on looking after Charlotte and that's not being sort of dramatic, that is an absolute fact because it's given us our life back. WHITE That was Julia - Charlotte's mum - ending Carolyn's report from Lancashire. ATKINSON And we're getting a lot of e-mails. Rich Downs has e-mailed to say: Isn't it time that the government woke up to the fact that paying for care is impoverishing disabled people - he says - fair access to care is effectively a joke. Ivan Lewis, you're the care minister, people say you as a government really don't understand what it's like on the coal face, do you accept that? LEWIS Well I spent my working life, before I was elected to parliament, working in social care for a series of voluntary organisations, so I think I do and I think I know how important it is in terms of people's quality of life, their dignity, their autonomy, their ability to function as equal citizens. I don't think that the system was set up for first of all the fact that we have an ageing society - people living longer - also now disabled people not only have full life thankfully but they expect complete lives and the ability to live totally independently. So I think the system is finding itself facing new challenges as a result of demographic change but also as a result of rising expectations. My job as a government minister is to make sure of two things: one is that we are tackling, not shying away from, the need for long term fundamental reform of the funding system, 2008 will be the beginning of a serious attempt to do that. But secondly, beginning to transform the system from this April over the next three years throughout the country in every local authority area to give people a much greater level of control over their own care through personal budgets and a shift towards early intervention and prevention. ATKINSON Are you going to take the struggle out of it because it's all - it's all a battle at the moment? LEWIS What parents say to me - and this is going to be central to the Prime Minister's new deal for carers later this year - this is another example of us really tackling some of these issues head on - is that what carers want is two things essentially - a system which is on their side rather than a system they feel they're constantly battling with and also a right to a life of their own. Carers do want to fulfil their caring responsibilities but they also feel they have a right, as human beings, to have their own life too. ATKINSON Ivan, we're going to be talking about that in just a second. WHITE I'm sure the Neil and Mike want to have a go at that, we'll do that in part two. You're listening to You and Yours with Peter White and Carolyn Atkinson in the first in a special season of programmes on social care. The time is just after 1231. Before one we'll be discussing some more of the issues surrounding carers, raised by that report, and exploring the long term financial solutions which are most likely to get us out of this hole. ATKINSON Well still with us - Ivan Lewis, the care minister; Neil Dixon from the King's Fund and Mike Smith a care service user. So everyone seems agreed that the current system is, as the King's Fund puts it, not fit for purpose. Carers, as we've heard, are crucial whether they're paid professionals either working for social services or a bespoke agency or unpaid relatives, friends or charity volunteers - they're fundamental to making care in the UK fit for the 21st Century. So let's now spend some time talking about how we can make the lot of carers a better one. Friends and relatives feel put upon and unsupported by wider society, the professional system is patchy, it's squeezed and poorly paid, so is there anyway of solving some of these problems without spending more money? Well across the UK there are thousands of paid carers working for agencies or directly for social services, people like Annabelle. ANNABELLE When I first started caring there was a lot more involvement with the client and recently you basically were allowed to go in there and do specifically what needed to be done and go. There was not enough time for even the slightest conversation to see how they are, if there's anything else they needed doing - that wasn't the case. Agencies take on clients in their own homes up to as far as 50 miles distance from where you live. You could do a 200 mile radius a night and only get paid for the time you're with your client, not for the time that you're travelling. An average shift would be travelling 30 miles for a half hour slot and then on a further 15 miles for a half hour slot and then a further 30 miles across country to an hour slot and then back on yourself visiting the very first client that you visited that evening to put her to bed. I would have driven over a hundred miles but only get paid for four hours. I would get paid £32. I think the client must get very upset at the way they are treated. It makes me feel as if I don't want to be a carer any longer, it's not caring anymore. ATKINSON Annabelle, a paid carer who is thinking of giving up her job. Well one of the problems is the supply and the quality of care, dedicated people like Annabelle are leaving and pay obviously has something to do with this. Ivan Lewis, how do we solve this conundrum at the centre of providing care? LEWIS I think there's a number of issues. First of all, that we want to see local authorities commissioning care only from those agencies that can offer quality and more specifically can offer dignity in the case of older people. Time and time again we're told by older people and their families they don't feel that they're being treated with sufficient dignity. And I think another element to this is by giving people themselves maximum control through personal budgets it's more likely that we're going to end up in a situation where people actually only purchase from those care agencies that can offer the personalisation, can offer quality and can offer dignity. ATKINSON But even if people move towards the most personalised agenda, as you call it, people who don't want to do that will get their care from agencies and agencies are giving sort of 15 minute slots, 20 minute slots - and we've heard there she's driving halfway round the county to do it. That is not right for the person who's being cared for but it's also appalling for the carer. LEWIS No but if you give people control over their own budgets what that means is that some of them will choose to have their own money and employ their own staff but others won't but what they will do is have maximum control over where they get their care from, they won't have that imposed on them by a local authority and they will inevitably be choosing agencies that can offer a more responsive high quality service than one which isn't satisfactory. ATKINSON But if you take a step back from that the agencies, however good they are, are still offering pretty low wages, you know just above the minimum wage, people are leaving because of the money. LEWIS Well I think that's true and I think part of the long term fundamental reform of the funding system needs to be a serious look a workforce reform. We've had a whole process in the health service about workforce reform, we need a similar process in terms of the social care system. And we definitely need to raise the status, the training and the valuing of those people who work at the front line of the social care system. ATKINSON Neil Dixon from the King's Fund, how do we raise the status, how do we make this happen in your view because you've been talking to people who do the job and who are service users? DIXON Well first of all on the notion of people who are paid in order to provide care, I think that there's a longstanding problem of low pay in this industry and as Ivan says I think that if the only way really to drive up standards here is to give more control to people themselves, so that they're able to choose more effectively. I think we do need to look at the commissioning process within local authorities, as indeed we're looking at in the health service and how that's gone about and ensure that agencies that are providing care are providing care of the right quality. And we've done a lot of work over the last 10, 15 years looking at quality in residential care but I think the work of the Care Standards Commission has already shown that there's a lot more to be done in domiciliary care - the care of people going into homes - and to improve the standards there as well. ATKINSON But one of the problems, isn't it, is the system is so sort of impenetrable and it's scary and if you're new to it and perhaps you're both elderly, if you're relying - you're looking after a spouse or you're having to do the whole care thing yourself starting to sort of break into it is very, very difficult - how do you crack that? DIXON It is difficult and it's not only even difficult for people who are having their care funded by the local authority, it's actually difficult for individuals who are trying to manage and pay for the care themselves and that's why I think the role of the care manager, the local authority helper, is so important in this and I know that people have commented that at the moment too much - people are doing a kind of tick box exercise but the degree to which that can be a liberating exercise, where the care manager is able to help people make choices that they want to about the sort of care that they want and that will vary, some people will not want to take on, for example, the employment of an individual. But nevertheless even those who want it - most of it all done for them there is an element of choice that they may be able to be given so that you don't get the wrong - the person coming in at the wrong time or coming in for a very short period of time. ATKINSON Which is what really upsets people. Okay, Neil thank you very much indeed. WHITE Well unsatisfactory many aspects of what we've got today may be but at least nowadays there is some provision by the state for people who are elderly or disabled and need practical help to lead as free a life as possible. That's not always been the case, so just how and when did the concept of social care develop and when did we stop sweeping it under the carpet like other uncomfortable issues that polite society was embarrassed about? READING - PHILIP LARKIN Sexual intercourse began in 1963 which was rather late for me. Between the end of the Chatterley ban and the Beatles first LP. WHITE Poet Philip Larkin mocking our modern know-it-all attitudes. But if he'd written social care began in 1963 he might not have been so wide of the mark. Of course vulnerable people have needed help since time began but it wasn't really until after the Second World War in Britain that the state thought this had much to do with it. Before that if you needed help, either because of age, disability or just an inability to cope with life, you had few options. You might be lucky and have a loving family. If you could show that you were unable to work through no fault of your own you might qualify for subsistence support from the parish under the so-called Poor Laws. And from towards the end of the 19th Century you might well have found yourself in an institution such as this long stay hospital. READING The day rooms were bleak and uninviting. In one of them sat 40 men in high backed Windsor chairs staring straight ahead or down at the floor. They seemed oblivious of what was going on around them. Some were seated in readiness at the bare tables, even though the midday meal was not to be served for over an hour. I was told in part justification of their inactivity that although they sit and vegetate they have company - they can see other people - that's better than solitude at home in one room, they're less lonely here. WHITE And before you say dismissively - ah well the Victorians - that account was actually written in the 1950s after a visit from the sociologist Professor Peter Townsend who was compiling a report on the kind of conditions in which people with learning disabilities were expected to live. MUSIC But with the bright hopes that often coincide with the end of a war the seeds of radical change had at last been sown. The Beveridge Report on social security would almost certainly have been implemented in some form whoever had won the 1945 General Election. CHURCHILL SPEECH I dwelt upon the importance of a national compulsory insurance scheme for all classes, for all purposes from the cradle to the grave. WHITE What Churchill had set in motion during the Second World War Atlee, after his landslide post-war election victory, implemented with the setting up of the National Health Service. ATLEE SPEECH Tomorrow there will come into operation the National Health Service. The aim is to ensure that the provision of proper care and treatment shall not depend on financial resources. It covers all kinds of care - doctor, dentist, midwife, health visitor, oculist and optician and surgeon. WHITE Though the impact of Labour's NHS was massive the concept of looking after people whose needs were rather less clear cut had still not taken hold. This was part of the 成人论坛's contribution to explaining what the brave new Britain should look like. 成人论坛 ARCHIVE What do you think of that Grandpa? Pity they couldn't have thought of all this sooner and made me old age pension a bit more what with me medicine and the extra fires this weather. But that's one of the things he wants to do Grandpa. If he had his way we'd all be insured against accidents or want or anything. It's all talk, they're always talking about what they're going to do. You might not have got your old age pension and there wouldn't have been any unemployment money and health insurance tax if it hadn't been for Beveridge and men like him. We ought to be grateful to him. Grateful! Bah, that's his job ain't it. WHITE Despite all the fine words performance had not yet caught up with political rhetoric. Peter Beresford, professor of social policy at Brunel University, reckons that at this stage Grandpa's cynicism was justified. BERESFORD Where social care starts is with the National Assistance Act and the National Assistance Act in some senses when it comes to the provision of services and it set up the old welfare departments still retained the old association that the Poor Law had of income over need. The idea was you should get no support unless you were destitute and if you were of working age and not seen to have an impairment then you wouldn't be getting it if you could be shown to be working, so you would have to go into an institution. And the institution was meant to discourage you from seeking support. WHITE It's arguable that in the end it wasn't social reformers or legislators who created the genuine notion of social care but two distinct movements which grew out of people's real experience. First out of the traps were the carers, although at the time - 1963 - the term carer didn't exist, it was just assumed that unmarried daughters would look after their ageing parents. It was Mary Webster who looked after her own parents for many years who began to question whether this was fair. And from that questioning came the Council for the Single Woman and her Dependants. Tim Cook has written the history of the carers movement. COOK They talked in 1963 about being under house arrest, which I think is a fantastic understanding of these very, very bright, educated, committed single women battling to look after their parents and when the parents died really left high and dry in terms of poverty, pension and often indeed their right to live in the house that their parents had lived in. And what they wanted was financial support and recognition that they had given up a lot. WHITE Their time had come and they knew it. With skilful use of the media and a keen appreciation of the political process they achieved almost immediate results. COOK It didn't take long for them to actually have financial impact. In the 1967 budget they managed to get the Dependant Relatives Tax Allowance increased up to a hundred pounds and for the first time applied to single women. There was an Attendance Allowance introduced in 1971 and then the great thing was the Invalid Care Allowance which came in 1976, which was again aimed at single women looking after elderly dependants. So within the organisation of '65, within 11, 12 years, three significant financial improvements had been made to their condition. WHITE And just as there had been little idea of carers as a distinct group so there was very little sense of disability as something over which people might make common cause. MUSIC During the freedom seeking '60s disabled academics began to evolve the theory that disabled people could stop apologising for being different. And people like Maggie Davies, who'd suffered spinal injuries in an accident which left her paralysed, began to question why that should mean she had to spend the rest of her life in a grim institution to get the physical support and care she needed. DAVIES When I arrived over there I was shoved in a little room, enough room for a bed and a little cupboard and a little tiny wardrobe and I thought my god am I going to have to live the rest of my life here. And then I sort of met the other residents and there were all these people that were desperately institutionalised, who were actually going to live there till they died. I was just suicidal to be honest, I mean I think they did worry about my mental health but I mean we were all suicidal, in the hostel we were all saving our pills up in a cupboard for the day when we might want to use them. And the other thing we were all doing was we were all killing ourselves with alcohol. It was so dehumanising and I was thinking well you know there's got to be some way out of this but I just didn't know what, how. WHITE An experience mirrored thousands of times, which gave rise to the Independent Living Movement, which took off during the '70s. Meanwhile the fundamental problem of care for the already fast growing elderly population had to be tackled. Enter to some an unlikely agent of social reform. KEITH JOSEPH STATEMENT Approvals for building homes for the elderly, compared with Labour's last year, are up 50% in real terms - 50% in real terms. WHITE Keith Joseph, often seen as the brains behind Thatcherism, he was in fact an early and staunch ally of the carers movement and the minister who implemented the Seabone [phon.] Report, which created social services departments designed to bring all the caring services under one administrative umbrella and run by local authorities. KEITH JOSEPH STATEMENT We're really beginning to improve - I emphasise beginning - to improve the hitherto neglected services for the mentally handicapped, the mentally ill and the huge number of the elderly. WHITE But like the National Assistance Act before it in practice these large departments seemed unwieldy and far divorced from the people they were set up to help. And with the 1980s came the wish for solutions which would reflect the free market spirit of the age. A new buzz phrase was born - community care. NEWS CLIP A report commissioned by the government has called for sweeping changes in the way old people are looked after. The report by Mrs Thatcher's advisor on healthcare, Sir Roy Griffiths, says the care of the elderly is the poor relation of the health service. It says local councils should take responsibility for it and that a new army of carers should be set up to help. WHITE And so the building blocks of the social care system we operate today were largely in place. A system which ties to juggle choice with growing demand and which has to ration care with a combination of means testing and increasingly tough assessment of need. Professor Peter Beresford, who is both a student and a user of the social care system, still feels we haven't got it right. BERESFORD It's been a matter really of all change and no change. Social care is absolutely littered, sometimes it seems almost annually, by restructuring, reorganisations, rebranding, rebadgings. And yes for many service users the problems still seem to be very much the same. The state arrangements haven't really worked, they haven't given us quality of support, they framed us as dependant, they haven't recognised what particular individual preferences we've got. What we really need is control over the services we have, equity that everyone can have something that's comparable and recognition of our rights as human beings. WHITE Professor Peter Beresford. So that brings us up to date but it doesn't solve the problem of where the money is going to come from to change the system and move it on. And in the short time we've got left we're going to discuss quickly some of the possibilities. Neil Dixon, in your report you appear to have an answer to the philosophy, anyway, of what sort of system we should get, because you talk about entitlement, what do you mean by that? DIXON Well it means that - and we were particularly talking about elderly people here - that there needs to be a compact - a new compact - between the state and the individual and the family. And that the role of the state has to change and as part of that the overwhelming view of the people that we consulted was that everybody should have an entitlement to some form of support. And that on top of that of course individuals may be able to make some form of contribution themselves. And indeed the clever way of changing the system is that where the state helps people it helps them in a way that builds on their current assets - so if they have got a home that it works with the grain of that in helping them to release the value of that home or that it supports people if they're wanting to take out insurance or - and in particular - it supports unpaid carers at the moment in a way that sustains them. So we need a more intelligent funding system. WHITE But it would still need more money, do you have a preferred source of where that money comes - tax, some kind of social insurance, using benefits - because the people you talked to didn't really - you know that's quite a complex area to ask people to solve isn't it? DIXON It is and I think people had divided views on it. And I think the answer is that we need to have an honest and open discussion. Will it all come simply from the tax system? I doubt it. On the other hand do we, as a nation, have to spend more on this and will we have - the state itself have to find more money? That's absolutely certain. Even to sustain the current entirely unsatisfactory system will require a lot more money. WHITE Mike Smith, you're being offered individual budgets, direction of care but that too - the money again - has to come from somewhere, do you have a preferred source and are you excited by directing your own care? SMITH Well directing my own care is obviously a very good way forward for me because it gives me a lot more choice than I would get if it was provided directly. In terms of the money - of course one has to take into account that by providing the support I then get to participate fully in society - paying more taxes and more national insurance - and also I'm therefore an economic part of the wider system, contributing to the country's GDP. So by providing decent quality social care to disabled people you're actually boosting the economy overall. WHITE Ivan Lewis, this is - I mean the green paper is going to be the result of consultation but you must have views, you've not been sitting in that office without forming some views about how you would do this. Can I just whizz through some of these - I mean, for example, is it more tax or is it a question of some form of social insurance, which of course takes a long time to kick in or is it a mixture of all these things, what is government thinking on how you're going to do this? LEWIS Well first of all we have to be clear about what questions are we seeking to answer. What sort of quality do people have a right to expect from the system? How much as a society are we willing to pay? What would be regarded both as fair and sustainable on a long term basis and what should the respective responsibilities of the state funding through general taxation and the individual be? Those are the questions that we have to answer in the period ahead as we have this public debate and consultation ... WHITE People say they will pay more tax for this, don't they, when they're asked they say that and that seems to be confirmed by Neil's report. LEWIS No Neil's report's very clear, Neil's report said the majority favour a shared responsibility between the state and the citizen and reject the notion, for the first time arguably, that free care for all is either doable or desirable. So the question we have to answer is what is fair in terms of what the state should provide as a national entitlement in terms of funded via general taxation and what should we expect individuals to contribute and how should we expect them to make that contribution in a fair and equitable way because people who work hard and play by the rules do feel that the current system penalises them in terms of having saved for example. WHITE So would that - so you would accept that the kind of means testing, which happens at the moment, and social services happens because - it says - because you don't give them enough money, you're saying that's not fair? LEWIS Well it depends on the balance of how you make those judgements. It's not that people don't think that they should contribute. The interesting thing about the report today is, is for the first time the public seem to be saying in significant numbers yes we accept we have to make a contribution but we want that to be fairer than under the current system. WHITE What about social insurance which Germany and Japan, I think, have gone a lot further down the road with than we have? LEWIS Well the report today quite rightly asks questions about is there the possibility of creating a long term care insurance market, should we be doing more on equity release schemes? Those are the very questions that we need to ask as part of the green paper process. We must answer all these questions in an open and transparent way ... WHITE So you don't have a view - Gordon Brown doesn't have a view on this? LEWIS Well the view that we have is that what is fair and sustainable going forward is undoubtedly a shared responsibility between the government, between a system that's funded via general taxation and individual contributions. But we have to define what that means in both those cases in the period ... WHITE But you say you accept universality, you're with Neil Dixon on that. LEWIS Well I accept that for example it's a nonsense that if somebody's a self funder they don't get assisted to make difficult choices about where to get their care from. What we've said as part of our transformation programme is that everybody, irrespective of their means, should get high quality information and advice about making these difficult decisions about where to get their care from. At the moment self funders are too often left on their own and that is not acceptable. WHITE Let me give a last word to Mike Smith, you're the person who - you know you and lots of people like you have to take the system you're offered, what would you want to come out of this green paper? SMITH Well I think there's a number of things. We do - talking about can we afford the cost - as a country we also need to think can we afford the cost of not giving decent support, can the economy afford so many people as unpaid carers that are not in work, is it reasonable that so many women bear the brunt of this responsibility? And I think in the wider sense of the review I think I'd like to see a number of things. WHITE Can I keep you to two because we've got about 10 seconds. SMITH Okay [indistinct words] equalities and independent legislation, increased financial investment but directed towards personalised services and revised criteria that go away from risk and more towards social inclusion and improving life chances. WHITE Mike Smith, thank you very much indeed. No pressure - we've got a whole month to crack this. And my thanks also to Ivan Lewis and Neil Dixon. ATKINSON And just to remind ourselves here on You and Yours and Woman's House we'll be looking at Care in the UK throughout January, there'll be various reports and all your thoughts will be collated and forwarded to the Department of Health. All the programmes are available as podcasts from our website - the Care in the UK website - there's a message board for you to discuss the care system and you can get more information by calling 0800 044 044 and Peter will be back for tomorrow's phone in on child poverty. 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